This study aims to describe the ways in which Mexican adolescents and adults with intellectual disability exercise autonomy. Two focus groups were carried out with family members who are the legal guardians of people with intellectual disability who have received independent living training at the Center for Integral Training and Development (CADI, per its abbreviation in Spansh). Focus group transcripts were analyzed with codes defined a priori, based on an existing theoretical framework on autonomy and quality of life among intellectually disabled persons. Autonomy is exercised by the intellectually disabled in the personal, social, sexual and economic spheres of life. Empowered autonomy implies that the person is taught the necessary skills and then allowed to act upon his or her own interests. Negotiated autonomy includes guidance, explanation and negotiation; it constitutes a learning process. Interpreted autonomy is the most limited type described, and implies protection, interpretation and may involve decision-making by others. These types of autonomy constitute a complex phenomenon and the divisions between them are indistinct.
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http://dx.doi.org/10.1590/s0036-36342008000800015 | DOI Listing |
Int J Qual Health Care
January 2025
NGO Mental Health Initiative, Lithuanian Tobacco and Alcohol Control Coalition, Stiklių g. 8, Vilnius LT-01131, Lithuania.
Lithuania ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2010 and started deinstitutionalization in 2014. This reform covers segregated social care institutions where persons with mental health conditions, psychosocial, and/or intellectual disabilities live. It aims to move away from institutional care and towards community-based services.
View Article and Find Full Text PDFEpilepsia
January 2025
IRCCS Institute of Neurological Sciences of Bologna, Full Member of the European Reference Network EpiCARE, Bologna, Italy.
Objective: This study aimed to identify prescribing behaviors in women of childbearing potential (WOCP) with epilepsy already taking valproate (VPA), and to investigate the relationship between VPA maintenance, substitution, reduction, or withdrawal as part of polytherapy, and seizure worsening or relapse.
Methods: We retrospectively reviewed the prescription behaviors and seizure outcomes in WOCP (16-50 years of age) with epilepsy, referred to eight Italian epilepsy centers, who were taking VPA for at least 1 year between 2014 and 2019.
Results: Among 750 women (~12% of all WOCP), 528 (70.
J Cell Biol
April 2025
Department of Genetics and Cell Biology, College of Life Sciences, State Key Laboratory of Medicinal Chemical Biology, Nankai University, Tianjin, China.
TBC1D20 deficiency causes Warburg Micro Syndrome in humans, characterized by multiple eye abnormalities, severe intellectual disability, and abnormal sexual development, but the molecular mechanisms remain unknown. Here, we identify TBC1D20 as a novel Rab11 GTPase-activating protein that coordinates vesicle transport and actin remodeling to regulate ciliogenesis. Depletion of TBC1D20 promotes Rab11 vesicle accumulation and actin deconstruction around the centrosome, facilitating the initiation of ciliogenesis even in cycling cells.
View Article and Find Full Text PDFBirth Defects Res
February 2025
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
Background: Almost half of individuals born with Down syndrome (DS) have congenital heart defects (CHDs). Yet, little is known about the health and healthcare needs of adults with CHDs and DS. Therefore, we examined comorbidities and healthcare utilization of this population.
View Article and Find Full Text PDFJ Rehabil Assist Technol Eng
January 2025
Department of Allied Health Sciences, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Introduction: Traditionally, augmentative and alternative communication (AAC) user interface development has been a time-intensive process requiring expertise in software development, often excluding people who use AAC. This paper demonstrates the involvement of an end user in the design and testing of prototype AAC user interfaces (UIs) developed using a platform called the Open Source Design and Programmer Interface (OS-DPI).
Methods: Micro-analysis of in-person conversation involving an adult with intellectual and developmental disabilities who uses AAC revealed several problems related to accessing his aided AAC device.
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